DOCUMENT RESUME EC 302 950 ED 369 220 Taylor, Steve, Ed.; And Others AUTHOR TITLE Safeguards. Syracuse Univ., NY. Center on Human Policy. INSTITUTION National Inst. on Disability and Rehabilitation SPONS AGENCY Research (ED/OSERS), Washington, DC. PUB DATE 93 CONTRACT H133B00003-90; H133B80048 NOTE 19p. Viewpoints (Opinion/Position Papers, Essays, etc.) PUB TYPE Non-Classroom Use (055) Guides (120) Policy Bulletin; n3 Win 1993 JOURNAL CIT MF01/PC01 Plus Postage. EDRS PRICE Adults; *Change Strategies; Compliance (Legal); DESCRIPTORS *Developmental Disabilities; Family Programs; *Federal Regulation; Group Homes; Helping Relationship; Human Services; Institutioaalized Persons; Legal Responsibility; Normalization (Disabilities); Personal Autonomy; *Public Policy; *Quality Control; Resistance to Change; *Safety *Regulatory Evaluation; State Regulation IDENTIFIERS ABSTRACT This policy bulletin addresses the issue of protecting the safety of people with developmental disabilities from their increased risk of neglect, abuse, and mistreatment. An article by Steven J. Taylor considers "The Paradox of Regulations," noting both the protective effects of regulations and their effect in stifling innovation and creativity and undermining normalization and community integration. The article contends that regulatory reform depends on reform of the current developmental disability service system, that people with developmental disabilities and their families shouli be provided with clear-tut rights and due process mechanisms, and that informal mechanisms to promote the quality and responsiveness of services should be encouraged. The remainder of the issue coi.trasts two approaches to increase people's security. One, which is called administrative regulation and related legal advocacy, formalizes the relationship between people with disabilities and service providers. The second, called lifesharing and other personal commitments, calls for and relies on personal commitment in building communities and protective relationships. Contributions, limits, and effectiveness factors are listed for each approach. Specific recommendations address empowering families, reducing isolation, making services more effective, and supporting the contribution of families and friends. Twelve steps to reduce regulatory excess and encourage quality are listed. (Contains an annotated bibliography of 13 items.) (DB) *********************************************************************** Reproductions supplied by EDRS are the best that can be made from the original document. *******************************A********************************** U.S. DEPAPTMENT OF EDUCATION Office ot Educational Research ano irnproverneni EDUCATIONAL RESOURCES INFORMATION CENTER IERIDI document has been rewoduCed as frolns tne Person Of organization 7..7 Minor changes nave Peen rnade to improve THE CENTER ON reproduction duality Points of view or opinions stated in this docu. rnent do not necessarily represent giticial OEM position or poncy HUMAN POLICY Policy Bulletin No. 3 Research and Training Center on Community Integration Winter 1993 Center on Human Policy, School of Education crz, Syracuse University SAFEGUARDS C.4 THE QUESTION To increase safety The question--What can we count *Strengthen community on to make and keep people *Improve needed assistance safe?--frames an important perspective on the continuing work of building communities that offer people with Efforts to ensure the safety of people developmental disabilities full and who rely on services have an instructive It arises from a dignified lives. history. Many of today's approaches to realization of the vulnerability to improving quality through policy, neglect, abuse, and mistreatment training, hands-on management, and risked by people who require external monitoring would be familiar to substantial, long-term assistance to nineteenth century asylum keepers. Then, take and keep their rightful place as as now, their insufficiency raises a It is shaped by a sober citizens. troubling issue. Can it be that the very recognition of the shortcomings of design of well-managed settings that meet unregulated relationships between every need frustrates our attempts to people with disabilities and their embody our good intentions? Could it be caretakers and the limitations and that the community services we have ironic effects of systematic efforts to carefully developed share too many keep people safe through professional, characteristics with earlier, now bureaucratic methods. Left to their discredited approaches? And if so, must of own services, a frightening number people with developmental disabilities care providers act inhumanly. But accept the built-in limits of total increasing investments in formal means environments as the best available to regulate these relationships don't compromise in a dangerous world? What proportionally increase confidence in strategies offer ways to constructively people's safety. Indeed formal systems engage these questions? seem to weaken the spirit of commitment necessary for caring Tj Discussion is relationships to thrive. t,r) animated by acknowledgement of the desirability and necessity of action to increase people's safety by both strengthening the ties of community and making necessary assistance more r7) relevant and effective. 2 1 1980s undoubtedly played a major role in LThe Paradox of Regulations transforming service systems from an institutional to a community-based model, Steven J. Taylor but left a legacy of strict monitoring for compliance with impersonal standards There once was a time when there based on a presumption of abuse and were few rules and regulations neglect in institutions and community governing the field of mental programs alike. retardation. The institutions were essentially out of sight and out of mind, The impact of regulations in the field and their terrible conditions and abuses of developmental disabilities is so represented the field's dirty little secret. pervasive that it extends beyond the Then came the 1960s and the 1970s and boundaries of the service system itself the seemingly endless exposes of into the domain of the community. In institutional conditions, law suits, and some instances, state agencies have legislation designed to protect people attempted to impose regulations on with mental retardation from the abuses nonfunded "life-sharing" arrangements they were suffering. Now, it seems, and threatened to professionalize unpaid almost everything in the field of mental roominates and friends of people with retardation and developmental developmental disabilities. disabilities is subject to rules and regulations. So, the question to be asking is not "Are services overregulated?"--because The regulatory environment this seems like a foregone conclusion--but surrounding services for people with rather, "What should we do about over- developmental disabilities stifles regulation given the historical pattern of innovation and creativity, places undue abuse and neglect?" In the remainder of emphasis on paperwork at the expense this article, I argue that regulations are of quality of services, and undermines paradoxical by nature and counter- normalization and community productive to the achievements of their integration. The Medicaid program is intended goals. one of the primary culprits in contributing to regulatory excess in the *Regulations in the field of field of developmental disabilities. The developmental disabilities represent the Intermediate Care Facilities for People bureaucratization of values. The with Mental Retardation and Related problem with rules and regulations lies Conditions (ICF/MR) program, (,,"-..11- not in evil intentions and narrow vision of Medicaid programs (day treatment), and those who promulgate them or in the even the Medicaid Home and insensitivity and ignorance of those who Community-Based Services Waiver monitor their compliance, but in the program are highly regulated and bureaucratic nature of the regulations threaten to remove the heart and soul themselves. No matter how noble or from community services. Medicaid, humanistic the values underlying rules however, is only an extreme example of and regulations, the process of overregulation of services. Many states bureaucratization distorts those values have developed regulations that exceed and makes it less likely that they will be federal requirements and impose rigid rules on nonMedicaid-funded services, such as family supports. The major class action law suits of the 1970s and 2 family life--the more highly regulated it fulfilled. As Blatt (1981) wrote, should be, at least at face value. Because "Surely there can be no doubt That if institutions represent the most extreme 'Love thy neighbor' were a federal form of unnatural settings, it follows that regulation, it would become they should be subject to the most meaningless and useless" (p. 346). stringent regulatory requirements. Regulations and institutions seem to *Regulations reflect the abuses of deserve each other. The closer any the past, and sometimes the present, setting approximates an institution, the but circumscribe the potential of the more highly regulated it should be. This future. The rules and regulations leads to yet another paradox of governing the field today are an regulations in the field of developmental outgrowth of institutional abuse and are disabilities: the more highly regulated a designed with institutions in mind. For setting, the more resources it requires, every form of evil and abuse that has and the fewer resources that are available been found at institutions, someone has to alternative settings. come up with a rule or regulation to Regulations are not without address it. *Regulations foster ritualistic their rationales. When taken out of the compliance and not fulfillment of their institutional context, regulations lose spirit. The more rigid the rules and their rationality. Regulations presume regulations, the more compliance with the impersonal, hierarchical, and them becomes an end in itself. bureaucratic structure of institutions. Institutions and ICFs/MR become The further removed from this consumed with demonstrating compliance structure, the more irrational and with the active treatment provisions of counterproducive they become. federal regulations, and the goals of active Herein lies the paradox: In order to treatment take second place. Paperwork meet the regulations, a setting or a becomes synonymous with programming home must become impersonal, and looking good replaces doing good. hierarchical, and bureaucratic, and these are some of the features that made *Regulations place control and institutions dehumanizing and abusive power in the hands of regulators, and in the first place. As the field tries to not people with developmental move toward more person-centered and disabilities and their families. People less institutional approaches to with developmental disabilities and their supporting people with developmental families are often called "consumers" of disabilities and their families in the services, but they are actually third community, regulations threaten to drag parties in transactions between funders, It is it back to the institutional model. with their funds and regulations, and a bit like subjecting home-cooked meals public and private agencies, with their to the same rules that govern fast-food programs and services. Rules and restaurants. This is the surest way to regulations, whether imposed by federal destroy the home-cooked quality of the programs, state agencies, or courts, place regulators and monitors as the guardians meals. and protectors of people with *Regulations are best suited to developmental disabilities and their unnatural environments but encourage families and, in so doing, deprive them of investment in those environments. control over their own lives. The more unnatural the setting--the more it departs from typical home and 4 3 and counterproductive effects, however, *Regulations direct attention to we cannot expect impersonal rules and concrete and tangible things and regulations to produce quality services or trivialize the most important things decent lives for people with develop- in life. A final paradox of regulations mental disabilities, and, in fact attempts is that the most important things in life to do so may actually have the opposite are the most difficult to measure effect. Regulations should be kept to a objectively. As a consequence, minimum and confined to concrete health, regulations place undue emphasis on safety, and related issues. tangible things, such as the number of square feet per bed, and trivialize the Second, regulatory reform will most important aspects of services. depend on reform of the current Active treatment comes to be equated developmental disability service system. with paperwork, rather than the The current regulatory framework is an quality of programming. This is why outgrowth of a service system dominated dismal programs with good policies by institutions and agency-owned and and plans can attain certification and operated facilities. As long as people good programs with insufficient with developmental disabilities remain in paperwork can be cited for institutions, community ICFs/MR, group deficiencies. homes, and similar settings, these facilities should be subject to regulations. Regulations are often criticized for If, however, the service system and their narrow focus on the medical and funding mechanisms shift to subsidies treatment aspects of services to the and voucher approaches for people with exclusion of community integration developmental disabilities and their and normalization, or social role families that place control directly in the valorization. Some states are actually hands of those who receive services, the moving to incorporate integration and need for regulations will be greatly normalization into their regulatory reduced. schemes and to require agencies to implement "outcomes"--oriented Third, as an alternative to the data-collection systems. Because current regulatory framework, people regulations emphasize tangible things with developmental disabilities and their and trivialize important things, such families should be provided with schemes are doomed to suffer from the clear-cut rights and due process same problems characterizing other mechanisms through which to exercise regulations. those rights. Despite its shortcomings, P.L. 94,142 contains vastly superior If regulations represent a paradox, protections to the highly regulated what are the lessons for regulatory ICF/MR program. If people with reform in the field of developmental delvelopmental disabilities and their disabilities? First of all, we need to be families can act on their own behalf as modest in our expectations of opposed to depending upon regulators regulations. In view of the historical and monitors, then disputes within the pattern of abuse and neglect of people service system can focus on important with developmental disabilities in things rather than the superficial aspects institutions and other settings, of services. regulations are a necessary evil to contend with evils in the world. Because of their inherent limitations 5 4 hold great promise, but it remains to Finally, informal mechanisms to be seen whether they will fall prey to promote the quality and responsive- the regulatory excesses dominating the ness of services--agency self- evaluations, consumer surveys, field today. self-advocacy, citizen advocacy--need to be supported and encouraged. These are not a substitute for formal Reference mechanisms in all cases, but in the long run stand a better chance of Blatt, B. (1981). In and out o f achieving quality of services or life. mental retardation. Baltimore: University Park Press. Many states are experimenting with more flexible and responsive This is a revised version of an article approaches to support children and that appeared in Mental Retardation, adults with developmental disabilities 30(3), 180-195. in the community, and even some recent federal court orders have incorporated them. These approaches SOME FACTS ABOUT REGULATIONS AND QUALITY +Quality cannot be mandated. +There are no guarantees of quality in any service system. 4+ Multiple approaches, including informal approaches, offer the best promise in striving for quality. 4+ Regulations and quality assurance procedures developed for traditional services are inappropriate for individualized, person-centered or family-centered services. +Regulations limit flexibility and can interfere with the attainment of quality. 5 ABOUT THIS BULLETIN Constrasting Approaches i This is the third in a series of Policy Bulletins presenting information based on and by John O'Brien and Connie Lyle summarizing research findings O'Brien relevant to federal and state policy on community integration for Selecting reasonable action to people with developmental increase people's security implies more disabilities. These Policy Bulletins are sent, free of charge, to people than a choice of tactics. Two different involved in policy issues at the approaches require consideration. national and state levels. They are One approach, which we call available, for a fee that covers the "Administrative Regulation and cost of copying and handling, to Related Legal Advocacy," formalizes others who write for copies. the relationship between people with The information in this bulletin disabilities and those who provide may be reproduced without assistance to them. This approach further permission; a credit line codifies expectations in statute, would be appreciated, and we ask regulation, and policy, or--if these that you inform us of your use of fail--in judicial decree. The system the bulletin. The Center on Human Policy welcomes values compliance and rationally comments and suggestions. planned improvement in standard and practice. Judgements about the This bulletin was edited by adequacy of response belong to Steve Taylor, John O'Brien, and professionals, with a variety of due Connie Lyle O'Brien. Kathy process mechanisms to resolve Hulgin contributed the bibliography of additional conflicts. resources. The second approach, which we call "Lifesharing and Other Personal The editors would like to thank Commitments," calls for and relies on Rachael Zubal and Bonnie Shoultz personal commitment. People choose of the Center on Human Policy for their work on the preparation to build intentional community or of this bulletin. protective relationships with one another. People value the struggle to This bulletin was prepared by live creatively in fidelity to the spirit of the Research and Training Center their commitments. Judgements about on Community Integration, quality of shared life depend on mutual Center on Human Policy, School of Education, Syracuse University, trust and listening among those who with support from the U.S. share a commitment. Department of Education, Office Each approach offers something of Special Education and different, but the two mix poorly. Rehabilitative Services, National Compliance undermines the spirit of Institute on Disability and commitment. Fidelity depends on trust Rehabilitation Research, through Cooperative Agreement and breaks down without personal 11133B00003-90 and Contract identification and shared values. See Number 1-11331380048. No pages 6 and 7 for depiction of these endorsement by the U.S. approaches. Department cf Education of the opinions expressed herein should be inferred. 7 6 ADMINISTRATIVE REGULATION & RELATED LEGAL ADVOCACY LIMITS LIONTRIBUTH22.1 Adversarial relationships, necessary for proper procedure, Allows rapid change. Some things can be done "with may harden, pushing apart people who need to work the stroke of a pen." together to achieve results. Permits broad, uniform movements in policy. Regulations are infrequently written by those most affected. The people closest to the situation typically have to rely on Can send strong signals about system direction. others who are experts in procedures to speak for them. Can shape the common sense of what is unacceptable. Regulations limit flexibilityand provide an excuse for inflexibility. There is limited allowance for difference in Can shape the common sense of what is possible and individual situations. desirable. Regulations can be used on people with disabilities to Can clarify what is in people's best interest. maintain and extend the power others hold over them. They can be used to iustify practices that are against the Does not require waiting for public attitudes to change. best interests of a person with a disability. Offers public debate of difficult questions; can improve Regulations are often very hard for people with :lisabilities understanding by insuring that different points of view to understand. are heard and assumptions and conclusions are challenged. Procedures for insuring fairness can get complicated and take a very long time. Offers leverage to increase vulnerable people's power to seek fair treatment in specific situations. Because regulations have to take account of the interests of several different groups, they can represent a compromise Can be used as a way to push new issues or start new on what would be best for people with disabilities. They initiatives. can represent what the regulators think they can get people to do rather than what they think is best. Offers a way to bring people to the table to negotiate with one another. Regulations can be hard to change, even when people agree they don't work well. Encourages people that something can be done; that progress is being made. Money isn't necessarily attached to regulations. Providers can be asked to do things without enough money to do them. And providers that don't live up to regulations can still go on getting money and keeping people. There are things that are important for people with disabilities that others can't be required to do. Changes in words in regulations can make some people think that things are really different for people with disabilities. This isn't always true. [WHAT CONTRIBUTES TO EFFECTIVENESS?' Insure periodic review that accounts the positive and negative effects on people. Look for negative longer term effects that build up over time. Look for unintended consequences. Increase control of regulations by consumers. At least support the active involvement of consumer groups in negotiating regulations. This support may include helping people learn the skills they need to influence the regulatory process. Time limit regulatioos to insure that they are renegotiated regularly. Involve consumers and people close to them in reviewing draft regulations to ask exactly what they should expect from regulations and to identify possible problems. This purchases more thoughtfulness and improved foresight at the cost of making regulatory changes take longer. Look for ways to regulate that support individualization and innovation. Make tests of parallel systems such as peer review instead of regulatory compliance. 7 LIFESHARING AND OTHER PERSONAL COMMITMENTS LIMITS CONTRIBUTIONS Can't be done for masses of people. Answers the fundamental human need for committed, freely given relationships and for Grows slowly in terms of the number of people community of support and effort. included. Complements each individual's gifts. Relationships develop over timc. There are lots of ups and downs. There are disappointments and Raises basic questions--"Why are we here?"--for sorrows as well as achievements and jobs. Lifesharing every member and provides the place for people to is not a "Llx" for suffering, but a way to acknowledge look for the answer with others who share the and share suffering. search. There are limits to what people can do for each other Not necessarily dependent on human service funds. within relationships of equality and friendship. Offers natural ways for people to meet and support Doing away with professional/client distinctions one another without professional/client roles doesn't resolve issues of authority. intervening. There are very powerful social forces against lifesharing. It contradicts many common beliefs and practices. People do break personal commitments. There are some people lifesharing doesn't suit. Abuse is possible in lifesharing situations. &HAT CONTRIBUTES TO EFFECTIVENESS?' More people to live voluntarily in intentional community, including people with positions in managing the service system. Maintain the space lifesharing needs to grow by respecting its limits and not expecting it to take over for large numbers of people. Avoid the temptation to present lifesharing as a fix. 9 8 LOptions for Action I by John O'Brien and Connie Lyle O'Brien To NIake Children Safer We need to keep focus on strengthening and informing families More Powerful Families ..), with children with developmental disabilities. A child's parent or parents are the key to safety. Grandparents, aunts and uncles matter too. So do brothers and sisters. 4 When children live away from their families,-it is important to make sure that families are welcomed, involved and listened to. If a child lives away from a family and has no family involvement, it's vital that that child have substitute family members. ....>We need to work on ways to reduce family isolation and Reduced Isolation children' s isolation. Nondisabled school mates and university students have made such a big difference for some of our families. We need more ways to increase the chances that each child with a developmental disability will get a chance to meet "the other people" who can give the gifts of acceptance and participation. 4 We need to strengthen the sense of expectation that all children will be involved with their age peers in school and in recreation. Nondisabled children need to come to expect the presence of children with disabilities. This begins to overcome isolation and reduce the chances of abuse. 4 We need clearer, more detailed ideas about how to get the resources we all rely on to be involved with children with developmental disabilities without smothering them. We need good schooling without all containing special education; we need recreation without isolated special olympics. 9 How do we encourage the development and employment of More Effective Services more teachers who have the desire, the ability, and the assignment to facilitate the development of relationships between disabled and nondisabled students? We need to increase the range of alternatives available. People with disabilities are more vulnerable when they are uncooperative. They are more uncooperative when they are trapped in a situation that doesn't work for them. Most of the time there is only one situation possible. This increases the chances of a person getting trapped. 10 9